Common Sense and Patience: Arlene's Story

In consumer-directed services, personal assistants work directly for the consumers to whom they are providing support. There is no agency or nursing home to act as a "middle man." It is the consumers who have the final say how their care/support is directed. There are benefits and added responsibilities to this consumer-centered way of providing support. Anyone who has worked as a personal assistant through an agency understands that there are a hundred small - yet important - decisions that a personal assistant has to make while working with a consumer. All too often caregivers' hands are tied because their supervisor is not in the room, but rather in an office somewhere else. Having the freedom to be able to ask the consumer what their needs are, and fulfill those needs as they arise, can be very satisfying.

Arlene and Kevin have spent eleven years building a strong working friendship with one another. Arlene is an understanding and compassionate assistant who is a fierce advocate for her friend Kevin. Because they've become so familiar with each other, Arlene has taken over much of the supervision and responsibility of the five and sometimes six assistants who are providing Kevin with fourteen hours of care per day, helping him manage his Multiple Sclerosis and stay in his home. They have faced many challenges together, and both demonstrate the kind of strength of character that can make a consumer-directed support relationship successful.

I've worked with Kevin for eleven years, and he's going to be 75 soon. I'm the caregiver who's been with him the longest. When I first started, Kevin was a very, very active consumer advocate. He was on about five or six different board of directors for different organizations. I have learned so much from that man as far as disabilities go. He's just a mountain of information. He loves politics, and he's done some very important work in the government. His insight has been absolutely great. I've learned things that I'd never even known were out there - like the politics that he keeps track of and the insight that he provides for the different disability programs. He's a really interesting person to be around.

Kevin administers his own program, and he's created a manual for his caregivers. It's all Kevin's way, in black and white. It tells you how you're going to do his cooking, what he can eat, what he can't eat. It's going to tell you how to make his tea, what his drinks are, what goes into these drinks, what his physical therapy exercises are and how you do them, in what order you do them. From the time you come in through the door, it tells you what you're going to do and how you're going to do it. And when you have a space of time and you haven't got anything else to do, then you do this, this and this.

In February Kevin had a heart attack that did a lot of damage. He is now unable to do 90% of what he used to do by himself. When I first started with him, the work was mostly things like getting his breakfast, it was helping him get dressed, it was helping him do his range-of-motion exercises. It was, if he had any meetings, take him to those meetings. The work's a lot different now. He's left with just upper body movement pretty much. He can feed himself, he can put in his own hearing aid, his glasses, and he can wash his own face and hands and more or less the front of him. But as far as anything else, no; it's waist up, basically. He doesn't have the balance to do things like shoes and pants. Little things like wheelchair breakdowns are a catastrophe for anybody with a disability and we deal with these constantly. They really frustrate him, as do things like hearing aids. He can do them, but in the doing he might drop them. If it's on the floor, there's no way a person in a wheelchair is going to pick it up. He has a grabber and sometimes he can get it. A lot of times he can't get it. A lot of times he can't see where it is. So if it's a hearing aid, he could run over it and destroy it unless somebody's there to pick it up.

Most of the time now he works at his desk, and he's always got a radio or some music on. We do sweepstakes together sometimes. We love the thrill of sweeps. We both enjoy the same type of music. We both enjoy watching the birds. I did sweepstakes before I went to Kevin's. I enjoyed the birds before I went to Kevin's and music is something I've always loved. Those were three hobbies that I came along with and that we could communicate with when I started working with Kevin, and we share these things even after eleven years. He's got his talking books. He's even got the talking books that are magazines so that he can keep up with that. If he's in the bathroom brushing his teeth he can listen to his magazines. He does handwriting exercises because, at one point, he lost the ability to write, so now there's a list of all of his daily things he wants to do and he writes it out. He practices penmanship so he can continue to sign checks. I do things like helping him file receipts and credit card bills. I let him do just as much as he possibly can. The one thing I learned was give people just as much control as they can with their own lives. When you start taking control by over-helping them, you're not doing them a favor. They're going to resent it.

Kevin has three daughters and they are a godsend. If he had a bad day and I am pulling my hair, I call them up and get it off my chest. Because, you know, if I left it in, it was just going to bubble up inside and the next thing you know I'm going to be job hunting. I get these little e-mails that say things like, "Thanks for everything you're doing." They'll say something like, "Well you may not be a blood sister but you're definitely a sister. You've been around long enough."

He has a very good relationship with all of his girls. They are so helpful. If you need something, you mention it, and it's taken care of. We needed the Hoya. Kevin did not want to accept the fact that he was getting weaker and weaker. He'd fall down; it was hard to get him up. We could hurt ourselves trying to get him up, or his son-in-law would have to come over and help. A lot of times Kevin will just say, "Absolutely not. Not going to happen, that's it." Okay, we sit back; we take a couple deep breaths and maybe a day later say, "Kevin, hey, if you want us to do the job we've got to have the equipment." I talked to his daughter and said, "Well he's being stubborn again. We need the Hoya, it's getting that bad." She talked to her father and said, "Hey, the girls say we need to have this." He's reasonable, but sometimes you have to just give him a day. These are big things he's facing about his life. Maybe he's having a bad day and he doesn't want to deal with it, but he understands. He came around and said okay for the Hoya. His daughter called the doctor, got the prescription, called and ordered it – I think maybe it was a week, ten days, the Hoya arrived.

One of the benefits of consumer direction is that if consumers have a say in who they choose to work with, it is more likely that they will make a connection with someone who they can form a relationship with, and who will stay in the job for long time. There is a certain understanding and insight Arlene has into Kevin's needs that could not form between people who only share a few hours a week for a short period of time. Arlene knows Kevin as a person and as a friend. His MS and the management of his care is one part of the much larger picture of who he is. Because she has had the time to know him as a whole person, she is better equipped to know his needs and advocate for them to others.

Because I've been there longer, a lot of the supervision has fallen to me. The three of us that have been there the longest sometimes have to shift some supervisory duties to the others. If I'm off on a Wednesday and the nurse is coming over on Wednesday, then somebody else has got to tell her what kind of medication we need. When we bring somebody new on board, automatically he will start fretting which will bring his energy level down. He'd like to keep me and the same old people on 24 hours a day, seven days a week. He'd like to lock us up and not let us out.

In a lot of what we do now, we're supervising ourselves. Like, if I'm cooking, he's not telling me what to cook; I'm planning the meal. If washing needs to be done, he's not telling me I need to do washing. If I come in and see three loads of washing in the basket, I'm going to say, "Oh, the girl didn't do the washing last night." So, he's going to put it right on her list of things to do – didn't do washing last night. That's as far as the supervision on his part goes now.

Some people just like to take the easy way out. They think, "Okay, I'll get his supper; I'll empty the wastebaskets and take out the trash. The floors don't need sweeping." We've had people like that and when they come in you either have to leave them a note, or when they walk through the door say, "Hey, last night you didn't sweep the floors. You're supposed to do that every night. Could you please remember to do that?" You try to be as nice as possible so as not to cause friction.

One problem we're having is that Kevin responds to older people. People like to communicate with people their own age. And if you're having trouble doing things, somebody that's in their seventies is going to respond a lot more sympathetically, and be a lot more patient with you than somebody that's in their twenties. They're a lot more understanding because understanding and compassion comes with age. People are not born with common sense and patience. I don't think any of us are. The world would be a better place of everybody was born with common sense and patience.

Understanding Kevin is one of our biggest problems. He has had trouble talking since I started to work for him; it's part of the MS. Of course the more people try to get him to talk the more tired he gets, the weaker his voice gets, the more frustrated he gets. And when he gets frustrated, he'll take a deep breath and he'll yell because that's how he can make them understand. A lot of them think he's being mean. He's not. He's trying to do it the only way he can do it.

I've tried to explain it to the other caregivers, but there are times when I just have to say, "Hey, don't get upset. Yes, he's frustrated when he yells. But you need to understand he's frustrated because he can't talk the way he wants to talk." With younger people, they automatically think he's mad at them. He's not mad; he's frustrated.

Say Kevin's in the other room and he wants something. He might say, "Arlene, I dropped my pencil." I'm not going to hear what he said. Nobody's going to hear what he said because he's got the TV going, he's got the radio going, or I've got the washing machine running or something. I hear "Arlene," but I'm not going to hear what else he said. So, I drop what I'm doing, go into the room and say, "Kevin, I didn't understand what you said. What was it?" I get right in his face directly, he repeats it, and I get it. I do what he wants done; I go back to doing what I was doing. It's so simple to me, I don't see where there has to be a problem.

The new girls are the ones that pay hell because they're the ones that aren't used to the routine. They're the ones that ask him questions and wear down his voice so they have a hard time understanding him. They're the ones that are taxing his patience. Some of them do better than others. And some of them will come in and say, "Well, I'll do this for you, you don't need to do this yourself." Or some will say, "He needs to be in a nursing home. He's too much care to be here." I've come right out and said, "There's nothing wrong with his mind. His kids do not need to put him anywhere and you do not need to talk down to him. You need to show a little bit of compassion."

There's nothing wrong with him. Yes, he cannot communicate well. I hate it when they come in and treat him like a child; like he doesn't know what he wants and they know better for him. That is not going to go over and because they can't treat him like a child and have him obey like a child. He won't do it; he has too much self respect for that. And because of it they don't stick around very long.

I can go in, in the morning, look at him in the bed, and just by the way he reacts within the first fifteen minutes of my being there I can tell whether he's extra tired, extra weak, or energized as hell. If he's real weak I'll say, "Kevin, I don't think today will be a real good day to try to go to church." Or maybe after breakfast I'll be watching him and I'll notice that he is extremely weak. "What do you say we skip exercises and you go back to bed and take a nap – you didn't sleep well last night." I'll make suggestions. Other times he'll come right out and say, "We're not doing anything today. Just put me back in bed. I'm tired. Or maybe I'll lay down in the recliner and rest." And he can lie down for a half hour and he'll be fine. It's just that he needs that little extra boost and sometimes I have to remind him of that.

The future is uncertain for Arlene and Kevin at this point. Medicaid, which is the source of the funding that pays caregivers who work in consumer directed programs, is being cut. At the state level, the responsibility for the funding and managing the programs are being shifted from one department to another as Maine struggles to manage healthcare costs. Changes happening on the legislative level are affecting people like Kevin and Arlene in a very real way.

The wages I get through the Attendant Services Program are $7.71 an hour. It's not a living wage. I've been with Kevin eleven years and a new person coming through the door gets the same rate of pay as I do. We also need to have benefits because we're not going to keep people in this program if we do not have benefits. I've been with Kevin eleven years. For health insurance I would have to leave. I know you can go to places like McDonald's and get more an hour than I'm getting. My nephew was job hunting and as an assistant manager at McDonald's he could get health insurance. We are in a healthcare profession. If we are working in a health care profession, why in the devil aren't we getting healthcare? It does not make sense. We're at the bottom of the ladder. We need benefits. Last time I looked into health insurance for my husband and myself it was $700 and something a month. We are federally and state funded through this Attendant Services program yet we do not have health insurance. To me that makes no sense whatsoever.

Insurance and paychecks are problems that we've been dealing with forever, but the biggest thing we're dealing with right now are all these cuts in funding through MaineCare and other cuts to the agencies that do the consumer-directed personal assistance services programs. One effect of all of these cuts is that we expect to lose hours of care for Kevin. Right now he can get funded 100% of the cost of living in a nursing home per week. That is going to be cut, so it's 90% of what it costs the state to put someone in a nursing home each week. Kevin is going to be losing sixteen and a half hours of care per week. On top of that there are MaineCare cuts coming soon, so that the eighty-six and a half hours of care that he has left every week, as of August first will then be cut again.

More than likely I feel that Kevin will end up in a nursing home - if not right after his care gets cut back, very soon thereafter. He just is getting worse and by getting worse. He needs more care, not less. He's been lucky to stay home as long as he has. But we can only volunteer so many hours. We've got families. And basically that's what it boils down to is: if he needs the help and we can't get paid for it, we're going to be volunteering. His daughters work, which means they can take vacations they can take sabbaticals, but still they live in a different place than he lives. It's not convenient to run in and do this or run in and do that. They've got lives. If the cuts are too big, if he loses sixteen and a half hours originally and let's say they cut another ten on that because of MaineCare, that's twenty-six and a half hours less he'll have someone with him each week. That's too much time for him to be alone. To cut twenty-six and a half hours of care out of him will mean a nursing home.

If he doesn't have me and the other girls who've been around forever to care for him anymore, the state's going to have to start paying for physical therapy. They're going to start paying occupational therapy for him. Right now I and his other caregivers have a say in his therapy because we've been around him so long. We just look at him getting around and say, "Kevin you're doing it this way. How about if we do it that way?" We know how he moves. Somebody else as an occupational therapist has to come in and watch him, and see him do something several times before they get the body mechanics of how he moves. It's going to be completely different in a nursing home setting. They won't know him.

What'll I do for a job without Kevin? I probably won't be going into the physical part of it again. I will probably try to switch over to mental health or doing something with children or something like that because I physically – physically I don't think I can do it. I've got arthritis in my hands, I've got arthritis in my lower back, my hip, my knee, my ankle. There's no way I'm going to be able to continue. The more hours I put in, the more I hurt. And up until about three months ago, I had very little problems with my hands. Now I've got major problems with my hands.

I did home health care a few years ago. It was okay, but I had a bad experience. I had a little lady whose family wasn't taking care of her. I was very uncomfortable with that scenario. I don't think she was getting the nutrition she needed. Let's say I was in at five o'clock until midnight, and I would take a snack or something to munch on and she'd be right there eyeing me. And I'd offer it to her and she was actually grabbing stuff and she would just eat like it like there was no tomorrow.

I reported it and they sent Elder Affairs to investigate, and suddenly food started showing up in the cupboards. Things did improve and then she had a heart attack and ended up in a nursing home. Most of the people that I had in my home care job eventually ended up in a nursing home because they just couldn't get enough care where they were. There wasn't enough family to care. With that job each client was different. I didn't come in contact with the family a lot, if any in some cases. I went in, I went out, I went in, I went out. And they were always short term in my case. A lot of caregivers will have the same client week in and week out, but I didn't. It would be hard to do that kind of thing again, because when I leave a client's house I don't know what's happening to them.

Kevin and I know each other inside and out, I'm quite sure. He's a friend. And when he goes I'm not only going to be losing a client, it's going to be a friend. We've lasted longer than most marriages!

Thinking about losing Kevin to a nursing home is hard, because I get a lot of satisfaction knowing that I'm helping somebody in the final stages of their life. While they're here I can do the best I can do to make their lives more comfortable. And that's the same thing I want for me when my time comes. If tomorrow I'm going to be in a wheelchair for the rest of my life I want somebody with some compassion, somebody that can laugh with me, somebody that can cry with me, and somebody that makes me feel comfortable to be around and that I'm not a burden.